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Missing Church & Anaphylactic Reactions

Written on January 19, 2017 at 7pm

I so want to go back to church.

Last week I was doing better, the latest drug is doing its job. I thought maybe I could go to church. I went early and hid out in a room away from everyone. I kept the doors closed, listened through a speaker and oh how I enjoyed the meeting.

Then I tried to leave early so I wouldn’t bump into anyone. The idea was to stay away from people and fragrances of all kinds since I am still reacting to almost everything. I came out the first door and the second was open. I was surprised and inhaled; I inhaled a super strong perfume. I knew I was in trouble but inhaled again to hold my breath until I could get outside.

My doctor taught me that these exposures layer on each other.

The next day I go to work, despite having an air purifier on my desk there are several fragrances in the hall I work in. I was exposed to them several times as a necessity of doing my job. I was also exposed to a chemical fragrance in the lobby where I work for the same reason. I struggled that night and ended up missing work the next day. I thought “I can get through this” and went to work on Wednesday, not the easiest day but I did get through it.

Today due to my insurance refusing to pay for the rescue inhaler that has been working for me I used the new one, ProAir – not connecting that the ethanol in the inhalant had corn in it. I had an extreme reaction (anaphylactic) to it and am grateful for the doctors at UHS right across the street from where I work. Shots and more drugs later I am shaking, sick and exhausted, but my throat has stopped swelling and I can breathe. My husband and daughter picked me and the car up. He dealt with getting me a nebulizer (a machine that helps me inhale albuterol to reduce swelling) and all the medicine approved by insurance, so his work day is shot too. It is only now (7pm – this happened at 9am this morning) that I can even think, albeit through a severe headache.

Tomorrow however there are more calls to make as we need to prove to the insurance, CVS Caremark, that I REALLY NEED a specific rescue inhaler – and I am just not up to it.

Learning Asthma & Allergic Reactions, class 201. I wish I didn’t know.

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Posted by on January 22, 2017 in Uncategorized

 

Asthma, My New world

It has been 5 months since I was well. On July 31st I had a horrible reaction to Febreze that shut down my lungs. One day I was fine then the next and every one since – I have not.

I have been diagnosed with severe asthma. There is nothing anyone can do to make it better. It is hard to breathe all the time, some days are better, most are not. I am on multiple medications that I have to remember to take in specific ways at specific times. All new experiences and made harder by how tired I am and how sick the medications make me.

I have become the person who avoids other people. Me. I loved seeing, talking and spending time with people. I loved serving in any way I could. Now serving others is so hard, most days I can barely take care of myself much less my family.

In our church food is a way to fix anything. Had a baby? We will help by providing food, Someone in the family sick? We will help by providing food. While this can be very helpful for some, because of our food allergies it is not an option at our house. In fact because I am the one who cooks the food dropping off even fruit and veggies can go wrong as I am not well enough to prepare them. It is sad but true.

I have been struggling with being isolated by this illness, but due to how reactive my lungs are to just about everything being around people (in person) isn’t in the cards right now. I am trying to get better so that means that I am ‘that’ girl and need to avoid others.

I hate it. I hate all of it. I hate not having the energy to do even the simplest things. I hate being exhausted because it is so hard to breathe in and out all day long. I miss the life I used to have.

I know there are those who don’t know what to do. Would you like to help? Please call or send a note in the mail. Once I am back to work I won’t have the energy or time to check emails or facebook, hence the reason for notes/snail mail.

I am writing this because many of you probably don’t even know I have been ill and many more of you don’t know what you can do to help. Beyond calls and sending notes please continue to pray. God knows what I need, I hope I eventually figure it out too!

Thanks and love, Nanci

 
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Posted by on January 22, 2017 in Uncategorized

 

Loss

Typed a month ago but forgot to publish:

Grandma died and I spent Mother’s Day at the funeral home.

My boss died in mid-july and I still miss him terribly.  With him went vison, hope and joy in my work.

This past weekend my good friend died, expected or not it hurts.   She watched out for me and checked on me in spite of being ill herself.

This allergy to Febreze has cost me my freedom, the life I expected, the goals I had set and the joy in planning for them.  I am grieving for the life I had hoped for and trying to figure out how I live in this new world.

 

 
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Posted by on November 11, 2016 in Uncategorized

 

Two and a half Months

July began huge personal changes for me.

In July my wonderful boss died suddenly.  His death is such a loss and with him and partly because of my illness went the joy in my work.

A little over a couple of months have gone by and everything is different, and not better – worse.

With the death of my boss, my job has become less-than.  I am no longer expected to be more, to strive.  It is a union position and I have been limited to my job description.  No joy or self satisfaction in my work, just mind numbingly dull data crunching that most anyone can do and doing what anyone asks me, like putting meetings on a calendar.

Doctor visits and drugs with no end in sight.

Not being able to go out in public to see a movie or eat out.  Will I ever be able to travel???  I have done what was asked of me, always with the goal of traveling and serving when I was older.  Now I fear I will never get the opportunity.

 
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Posted by on October 3, 2016 in Uncategorized

 

Fear

I don’t want to be the person who is afraid to go outside, to go to the store, to hug friends.

 

But I am becoming her.

 

Yesterday I was afraid to hug some people I saw for fear of reacting and not being able to breathe.  I found myself saying hi but stepping back to make space just in case.

 

The fact that it is a justifiable concern doesn’t make it better.

 
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Posted by on October 3, 2016 in Uncategorized

 

Febreze

Febreze is of the devil – to me at least.

It is everywhere.  Church, the store, friend’s homes, cars even in laundry soap and garbage bags.

How can I have a life and avoid it?  Will I ever be able to get on a plane?  Just last night I reacted to a family who was seated next to us in a restaurant – I had to leave the building.

 

 
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Posted by on September 28, 2016 in Uncategorized

 

Incremental Improvement

I want to bounce back and that just isn’t happening.  I’ve always bounced back, been able to take care of things.

Not now.

It has been a slow, painfully slow process back to functionality.  Not better, but functional.

Will I ever be better?  Will I ever have the life I dreamed of, hoped for?

 
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Posted by on September 28, 2016 in Uncategorized

 
 
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